Frustrated with both VA and private insurance

Belle

Sorry if this is long, but this is mostly a vent. DH was diagnosed 18 months ago by the VA. The VA neuropsych never put his test results into their system and no one can retrieve it. Multiple doctors within the VA system have requested the test results from the doctor and these requests have all been ignored. He did get a diagnosis of neurocognitive disorder but that diagnosis is not in the list of on-going conditions in his VA record.

DH also has health insurance from his former employer. He also has a neurologist there but no diagnosis and no formal testing since 2018. I thought I could just get ahold of the VA records, meet with the neuro and get everything updated but since I haven't been able to obtain the records from the VA. Today we met with the neuro in person, first time in years, and they agreed to do another MRI and another 4 hour neuropsych test because they need a test to diagnose him, which I understand.

In the meantime, without his diagnosis in the system I cannot apply for VA aid and attendance for him. He was turned down by the VA social worker for palliative care ( he clearly meets the criteria for palliative care). He also does not qualify for respite days according to the social worker. When he was in the hospital this year I tried to get him transferred to rehab and was told that he was fine cognitively because he could talk to the nurses and they released him despite both myself and a geriatric care manager working on a transfer for him to care facility. The ombudsman at the hospital never returned calls despite multiple messages that it was not a safe release. They released him to me needing IV antibiotics and port management and so weak and confused he could barely function.

Anyone else dealing with issues from both VA doctors and the VA social workers? It's like I've hit a dead end and need both the VA and private insurer to get their records straight so he is treated appropriately.

ThisLife

I was able to get VA testing done and get the report. I suspect your main roadblock is not having the testing and diagnosis in the VA system.

Vets with dementia qualify for 100% disability. The VA will do everything possible to deny this benefit using the wrong assessment scale. I decided I'll need to get a lawyer to accomplish that.

Aide and attendance will be based on income and assets. Very complicated process that is better if assisted by VA Affairs Officers. This service is free, and the VA must provide it. (Then it depends on the VA affairs officer knowing the rules regs, and categories.)

The VA's social workers have been less that helpful in FL. (In NV they were offering me palliative care.) I've found that a lot depends on the knowledge of the VA social worker and medical personnel. They change often and most don't have a clue. The other factor seems to be how thin everything is stretched.

Fortunately, we have LTC insurance. I have placed H in MC. Now I just have to keep him from being evicted due to behavior. If I ever get that accomplished, I'll revisit chipping away at the VA stuff which I will need if LTC runs out.

Others will come along who have been more successful with the VA system and processes. I wish you luck.

annahowie

Belle

I went through very similar situation with my DH when all of this started 4 years ago - my husband also had the neuropsych at the VA and it took almost a month before it was uploaded into the system. How long has it been since his testing? In NC the neuro dept was dismal at best - his PC did more for him than they did. I didn't even know about the Mental Health program until I got here to MN! When they gave him the diagnoses for dementia I immediately went to the VSO to get his disability rating increased. As "ThisLife" mentioned that is 100% VA Disability rating and I also get Aid and Attendance. We moved to MN back in October and the difference in VA systems is night and day both in care and assistance! The approved me as his VA Caregiver so I get $$ for that and they provide respite care as well which I am now looking into.

The thing with the VA is that everything is a process and it takes time - you must focus and taking care of your spouse and let the people that know how to navigate the system such as a VSO do the fighting for you. It took 2 1/2 long years from diagnoses to rating but has been worth it.

Whoever did the neuropsych testing has a responsibility to provide those results - contact the VA hospital maybe administration department (I don't know exactly who) and see what can be done to have those results loaded into his chart and provided to you. Wish you the best and patience

Belle

Totally forgot about my post because I had moved on but I thought it might be worth an update. DH's neuropsych test was in June 2022. He is actually rated at 160% disability so he's priority 1 for healthcare and that rating was from before the cognitive issues started. Yesterday I downloaded his blue button report and found at least 6 instances where either he has or a doctor has requested the report from the neuropsych doc and it's still missing. Yesterday I called the patient advocate for his VA medical center and first she forwarded me to the mailroom who told me they cannot pull medical records from doctors offices. When I called her back she hung up on me. Then we went in person to the neuropsych office and requested the report. Was told it would be sent to us via secure messaging. Still no report as of Friday evening. I have had it with dealing with this issue and on Monday I am calling and writing our local Congressman's office to ask for help and will provide the VA records showing the number of times and number of people who have tried to get a copy of the test results. It shouldn't take 18 months for them to load the testing into their system. Also, he was turned down for palliative care by the social worker at the VA and I know he qualifies for that service also. It's so crazy frustrating to deal with their system.

Denise1847

Belle,

I am so sorry that you are having such a terrible time with the VA. What state are you in? I have enrolled my DH in the VA health system but haven't taken him for his "once a year" visit so that he can get additional supports should that be necessary. I haven't set up the appointment because I fear going through your same experience. We do have LT insurance and our primary insurance. I am wondering if it is worth getting into the maze of the VA system. I don't want to put my DH through more unnecessary visits and tests.

Can anyone tell me if it will be worth the try? I am in Maryland.

Belle

@Denise1847 my DH Is assigned to the Martinsburg WV Medical Center. We don't live in WV but that is where they assigned him. We have had some very good experiences with VA healthcare but when they fail it feels impossible to get things right.

Joydean

Belle the “once a year “ physical exam has now been changed to every 6 months. That’s according to the VA in Texas (started in 2023). My dh is a Viet Nam vet and was diagnosed with dementia in 2014 and again in 2017 ( by VA) , the 2017 was after he was hospitalized after I had to call 911 because he was suicidal! The police were very helpful. I still could get any help for him from the VA. Finally 2 years ago he was treated by a psychiatrist and a psychologist and anew PCP. We are now in the process of getting him rated for dementia for the disability rating. It is a slow and painful process. We have 2 more outside doctors to see him and more tests. I really don’t understand why the VA wants him to be tested outside of the VA. But it’s their game and we just have to go with. Best of luck to you!! And all veterans.

Denise1847

https://alzconnected.org/discussion/comment/196844#Comment_196844

Good Morning Joydean,

I applied for disability from the VA for my DH. He also was a Viet Nam vet and a marine stationed in Camp Lejeune. We went through the 2 independent doctor evaluations. They still denied him stating that Alzheimer's was not a "presumptive diagnosis" related to agent orange. I just now appealed it because someone told me that they always deny the first time. Sometimes, my head just spins from all the adminstrative hoops to jump through. Good Luck Joy. Let us know if you are successful.

Belle

@Denise1847 It took us two rounds to get DH approved. It was the Nexus letter from one of his care team that got us approved finally. Please keep pushing them for approval. Not sure if you have seen this info from the VA but more conditions are now considered linked to Agent Orange. It might be worthwhile trying to get him approved for something "easy" like high blood pressure and then try to connect the Alzheimer's as a secondary condition after he's approved (ie. high blood pressure can lead to dementia, which would be a second link from having high blood pressure from Agent Orange exposure, just an example).

https://www.va.gov/disability/eligibility/hazardous-materials-exposure/agent-orange/

ButterflyWings

Even if they were not combat vets and there is no service connection, a veteran with dementia is eligible for the Catastrophically Disabled status and that brings specific higher level services. Free. They earned it. I also found that activating his MyHealthEVet portal allowed me to communicate in writing, which gets more attention as there is documentation and a paper trail. FYI, diagnosis can be done by a community care provider even without a consult request (referral) from VA PCP. The MRI is not required.

There are several "approved" evaluation scales attached to the Cat. Dis. application, and we had 2 different docs complete a 1 page eval form to provide their assessment of his condition re IADLs, ADL, etc. Based on those scores, he was eligible. One member here secured a doctors letter stating their LO "needed constant supervision or would be a danger to himself or others" which was all she had to provide.

Granted, this is not the same as Aid & Attendance I realize (after a year of me doing the same dance you describe, DH did not qualify for that benefit due to service dates being 4 months short of the window for this and not being deployed in combat). So, there is no pension and no compensation to me for my 24/7 slog as loving spouse caregiver. But the health benefits we have access to through his Cat. Dis. classification have been hugely helpful.

ButterflyWings

I did a search here to pull any old threads on this as several of us were going through the process around the same time. I know things may change at the VA, but here are several of those posts and this is one way to go.

https://alzconnected.org/search?domain=all_content&query=Catastrophically%20Disabled&scope=site&source=community

Belle

@ButterflyWings thank you for that explanation. I had no idea that category even existed for folks may not have a service connected disability. I found this link to a VA page on that in case anyone needs it: https://www.va.gov/healthbenefits/assets/documents/publications/IB10-435.pdf. Also this link with a bit more explanation of the benefits: https://helpdesk.vetsfirst.org/index.php?pg=kb.page&id=2198

Denise1847

https://alzconnected.org/discussion/comment/196887#Comment_196887

Thank you so much Belle. I will look into this more.

Denise1847

https://alzconnected.org/discussion/comment/196897#Comment_196897

Thank you so much.

Denise1847